06 January 2023 , 16:51
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A 30-year-old man has died from a rare disease that nobody is thought to to have ever survived.
Jason Tolson, a warehouse worker, died on New Year 's Day after a battle with Anti-MDA5 Dermatomyositis, a systemic autoimmune disease that targets the lungs and causes muscle weakness.
There is currently no cure for it and it is believed there are no survivors of the condition.
His heartbroken friends and family said Jason was "always smiling" and "would do anything for anybody".
Dean Blakeley, 55, whose daughter Jade Dews, 29, was Jason's partner of 15 years, said the man had "a heart of gold".
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Dean said: "He was one of the nicest guys you could meet and would do anything for anybody.
"He was pretty quiet but had a heart of gold and would go out of his way to help you.
"Jason was making plans for when he came out because he couldn't wait to get out of hospital and go to TGI Fridays for a double rack of ribs. But obviously that never happened."
Jason with his girlfriend Jade Dews (Dean Blakely / SWNS)Jason first became ill in May 2022, when he started complaining about muscle aches and joint pains, and he started losing his hair and weight rapidly.
His symptoms then started to worsen and by November last year, his joints were that weak he struggled to walk and couldn't even hold a pen.
At first, doctors thought Jason might have had cancer, but after numerous tests it was discovered he had Anti-MDA5 Dermatomyositis.
Despite having a range of treatments, including two rounds of chemotherapy and being on 16 different drugs, he sadly passed away just six weeks after his diagnosis.
His best friend James Evans, 33, who worked with Jason at a DPD warehouse, paid tribute to Jason and said his death made him realise that "we take life for granted".
Jason (left) with his best friend James Evans (James Evans / SWNS)James said: "I was just in shock because I was celebrating New Years with my family and I got a phone call saying he had passed away.
"I realised that we take life for granted and it's too short so we need to appreciate each day.
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"He has made me appreciate each day because anything can happen.
"Something like this shouldn't have happened to Jason, it's not fair.
"He's only 30 years old and had his full life ahead of him - he wanted to get married, live in a nice house, have kids and start his journey but this happened.
"Jason was the type of person that would treat you like family, regardless of who you are.
"When we first met, he just welcomed me with open arms and was always smiling.
"He was friendly and would do anything for you. He was always helpful, if he was skint he would always find a way to lend you some money.
"He was so caring and his family and friends always came first. Jason was always smiling and was just a funny guy."
Jason's family are currently raising money for his funeral as they didn't "expect to do this at such a young age".
Dean, of Batley, West Yorkshire, added: "Jade is stopping with us for the time being because she's finding it very hard and can't deal with it.
"I'm dealing with it all as she doesn't want to organise the funeral or anything.
"So I'm doing it all for her. There's just so much to do and you don't expect to do this at such a young age."
Anti-melanoma differentiation-associated gene 5-positive dermatomyositis (MDA5 + DM) is a special subtype of DM, associated with rapidly progressive interstitial lung disease (ILD).
Research found that the overall prognosis is grave with 33–67% six-month mortality despite aggressive immunosuppressive therapy.
To donate to the fundraiser, click here.